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Old 03-08-2007, 03:38 AM   #1 (permalink)
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Default trach/vent questions

After being told that my husband needs a trach/vent ASAP... I was informed that less than 1-2% go on the trach/vent. This got me curious. How many of you caregivers on the forums are caring for someone on a trach/vent, and if so, how long, and what made you decide to go this route?. My husband and I never thought he wouldn't, since we have young children and he is only 45, but the information we are receiving is all very negative and one-sided. I would love to hear what people on this forum think, and if you are a caregiver for a trach/vent PAL, please tell me how you do it... Do you have skilled nursing? Are they in a home? . Thank you so much! Teej

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Old 03-08-2007, 07:15 PM   #2 (permalink)
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We are right at the point where my husband has to decide and he hasnt decided yet. If you dont get much response from this forum, try the Living with ALS yahoo group...there are many veteran 'vented' PALS on there all the time.

http://health.groups.yahoo.com/group/living-with-als

Good Luck! Beth (CALS to Shannon, diagnoseded 8/04 at age 40)
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Old 03-08-2007, 10:07 PM   #3 (permalink)
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I am shocked that the information you are getting is so one sided on the negative aspects. Given your husband's reasons for wishing to go on a ventilator, I think the medical professionals should be honest, giving you all the information you need to make a fully informed decision, and yet also supportive of whatever choice you make.
My dad did not choose to get a tracheostomy/ventilator, and we also experienced an negative attitude on the part of most hospital personnel. They almost seemed resentful that we were supporting him in taking what time he needed to make his final decision while intubated on a ventilator. One neurologist stated that none of his ALS patients had ever chosen the vent. I felt like telling him that perhaps he had not given them a true picture of their full options. I have read several websites where people of your husband's age have chosen to vent and have experienced a good life situation with this choice. Yes, they had to have 24 hour experienced care, and most had family members who were able to provide most or all of the care. This can be difficult, but how much more difficult, since your husband requires full time care now anyway? In-home nursing care can be very expensive, but if you are not needing it 24/7, because you and other family members are capable, you could work out overnights and breaks to help out.
My dad was 84, far different from your family's situation, and yet I still felt that he deserved the right to have the time and opportunity to make medical decisions for himself regarding this life or death issue. This is simply human dignity.
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Old 03-09-2007, 12:39 AM   #4 (permalink)
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Teej,
Considering your husband's young age and the fact that you have young children, the vent may be a good option for him. My husband was 61 when he decided to go on the vent, he had been diagnosed for about 18 months with the bulbar form of ALS and he went into respiratory failure. The vent could give your husband much more time with you and the children. And despite what some are telling you, it can be quality time.

There are some things you should be aware of though. The vents are small, about the size of a laptop and can hang on the back of a power chair. It will have on-board rechargeable batteries that usually last several hours, normally it should be plugged into the wall, and not be running on the batteries. There is also a cord to enable the vent to be plugged into an outlet in the car, this is great for anytime you're in the car, saves the batteries.

Your husband will require a 24 hour caregiver/caregivers. These caregivers must become knowledgabe of the operation of the vent and be able to troubleshoot alarms.
Your husband will have a trach which will require cleaning and replacing periodically. We used disposable inner cannuals (the inner tubing of the trach), which made daily care much easier. There will be tubing from the vent to the trach which will need to be replaced every other day or so. And the trach will need to be suctioned anytime he feels like he needs it, many times a day. The suctioning will cause him to cough, but it's not painful. The suction tubing we used was also disposable and easy to learn to use. I want you to understand that the level of care will increase with a vent. But it's entirely doable!

I had no previous medical training. While my husband was in the hospital, after he was put on the vent, I made the nurses and respiratory therapists, teach me how to do trach care and suctioning and monitor the vent. I knew I'd have to do it when we got home and I learned! I was scared at first, but after the first day, I became more and more comfortable with it.

I did hire an LVN as a caregiver to help us. She had never done trach care or had a patient on a vent, so I trained her! She was a Godsend for us! She became a part of our family and that's important, to have the caregiver 'fit' with your family.

With my husband on the vent and in his powerchair and with the van, we took him to concerts, movies, fishing at the lake, museums, the horse races, shopping, basically anywhere we wanted to go. We'd have to suction, but that can be done discreetly. And we never had an uncomfortable experience with anyone in public.

I know there are people living many years on a vent. You just have to have a good caregiver who is willing to learn. My husband died last year and I miss him so very much, I'm glad he opted for the vent and I'd do it all over again.

I know this is long, but thought maybe I could be of some help for you.

Michelle
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Old 03-09-2007, 05:53 PM   #5 (permalink)
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I remember telling my 14 year old daughter that I had ALS. I had recently learned of the disease myself, so like most people, I assumed I would live the estimated 2 to 5 years. Having chosen to vent, 8 years have passed and I am now a couple months away from being a grandfather to twins. Everyday is a beautiful gift. If I had chosen not to vent, I would have missed the most fulfilling time of my life (so far).

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Old 03-10-2007, 02:14 AM   #6 (permalink)
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Thank you so much to all of you... You are awesome! I love hearing your stories... Michelle, I am so sorry for the loss of your husband. I have virtually grown up with mine, and I could not imagine a time without him. I am sure it has been, in many ways, a painful year for you... Thank you for remaining on this forum and helping the rest of us. Your knowledge is invaluable...

We just found out today, at Jay's most recent appointment that his lung capacity has actually increased slightly from our last visit to the clinic four months ago, and is significantly higher than the pulminologist told us two weeks ago... Now whether this increase is due to faulty equipment, or a miracle, I do not know, but we will take it! His doc told him today, that he is still far from needing to make this decision to trach/vent or not ot, and that they are actually working on a vent that does not need a trach in the future, for PALS like my husband who can eat and don't have as much trouble with mucus. It was a very good visit today, very positive, and they actually encouraged us, given the ages of our children, to consider the trach/vent in the future, which was also very nice to hear.

You all are amazing... Thank you again and praise God for miracles! They do happen....Teej
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Old 03-10-2007, 08:32 PM   #7 (permalink)
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Great! I'm so glad that you had such good news at the doctor's! A vent without a trach sounds wonderful too. Maybe we'll have a cure before long.
I'll keep praying!
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Old 06-16-2007, 09:42 PM   #8 (permalink)
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Unhappy please help me

My husband is 47 he has als for 4 years now,and last friday we have to take him to the ER because he can't bread,they did the trac and the ventilator,but now they are tell me he have no choice because home ventilator is only affordable for rich people and we are no rich,a long term facility only would take him for 30 days,and his only choice is to go to a hospice were inmeditly they would remove his ventilator and just help him die peacefuly,and is just make me so sick because nobody had told us this things before,we live in florida and i just dont know what to do,and then i hear about other people the are doing so good with a ventilator,I really losing me mind can somebody out here help me to get in touch with the right people,I feel so devasteding please help me.

Sandy
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Old 06-17-2007, 12:42 AM   #9 (permalink)
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Sandy, I am so sorry about this terrible situation they are putting you through. I cannot believe they could tell a person that he must essentially commit suicide or his caregivers should commit murder once he has the trach and vent. This is definitely an inhumane thing to tell you. You need some support right away. If you are working and not able to stay at home to provide the necessary care during the week, maybe there are people in your community (family, friends, members of your religious group if you belong to one) who would be willing to be trained and have an assigned day to take care of your husband. It is not right that the choice of life should be only for the well to do. Don't give up. There must be a way. Sincerely, Holly
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Old 09-07-2007, 03:42 AM   #10 (permalink)
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Hi Michelle,

I read you post and thought you may have some input for my query. My mom in India has MND and it has now started to affect her breathing. She recently went into respiratory failure twice and was intubated and stablilized. Despite a lot of objection from our doctors, we are almost decided on invasive ventilation using a ventilator. We have tried BiPAP but it does not work very well for her - lots of discomfort, claustophobia and fear of aspiration.

Right now I am trying to find out what options do we have for home ventilation. Assuming that we have 24/7 care giver or nursing, can you point me to ventilator products out there that would be good to consider? The description of the unit you are using is appealing from a portability standpoint.

thanks for your help.
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Old 09-07-2007, 02:12 PM   #11 (permalink)
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Quadbliss has a small portable unit but I've forgotten the details. They are in another post somewhere here>
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Old 09-07-2007, 04:01 PM   #12 (permalink)
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Hi Rajiv, Teej and all who are curious to hear one caregiver's side of story.
My dad is living with bulbar als for 2 years now since onset of symptoms. I guess being 73, his progression was faster than usual, almost like the bulbar and limb progression was simultaneous. After about 1 and 1/2 year he was not only completely bed ridden but had a tracheostomy installed, but not vent yet. Finally, after couple of trips to hospital due to respiratory emergencies, we put the vent (PLV 102, its a bit bulky but ok).
Now the vent has made his vital signs stable, no doubt. But it has come at a cost. ANd the cost is unimaginable pain and suffering of living on the bed and being 100% immobile and dependent on others. Using only the eyes for communication and feeling helpless most of the time. Imagine you have severe pain (which we can see in his face), but you can't even express to tohers which part of your body needs attention. Imagine having to deal with mutiple pains simultanoeuly and its almost like there is unlimited supply of pain. Bedsores, muscle stiffnes and the damn tube down his throat to name a few. The fact that his personality was that of a control freak throughout his life isn't helping his emotional well being either because now he has no control what so ever on anything.
We do have nurses looking after him round the clock and they take care of the physical needs from suctioning to changing positions and urine, motion etc. But obvioulsy, the mental and emotional caring is the family's responsibility. It is extremely emotionaly draining for us too, but nothing compared to what he is going thru.
SO yes, the vent and the nurses are "keeping him alive" but it is coming at a cost.
Yes I too faced the negative attitude from doctors. Since I am an India, here it even more uncommon for people to be able to afford vents. It seems like most docs all over the world feel a terminal patient is not worth their attention. Our neuro even advocates euthanasia in general (not specifically for our patient ). "This life has no meaning" were his exact words. First it made me sick. But after months of seeing dad go thru unbearable suffering, I understand what he was talking about. Sometimes after a painfull episode, I see dad pointing his eyes towards the sky. I know he is asking to end his suffering. What am I supposed to tell him ? If we remove the vent is it "murder" or putting him out of his misery ? Is euthanasia a murder ? Isn't DNR also euthanasia because you can save a person but you choose not to ?
I really don't know how long this will continue. Only thing that is gauranteed is, the more he lives, the more he will suffer.
Now this is only my story. I am not giving any advice to anybody. Every patient and his/her family has different set of values and personalities. I guess everyones life has some purpose and it is upto the patient and family to decide (while the patient is still capable of doing so) what's best for everyone.

grp
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Old 09-19-2007, 07:36 AM   #13 (permalink)
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Hi Grp,

I can really understand the pain your Dad is going through. Having gone through some very tough last three and a half weeks where our family has had to take some tough decisions I know how you feel too. My Mom was initially very negative when things really got a lot worse three weeks ago suddenly but now I have seen the fighting spirit come back in her. Like your dad she too is a very mentally strong lady (and was physically too) so it is really very painful to imagine how they feel inside when they have to rely on help for the simplest of things.

After a lot of resistance from the doctors in India - we as a family decided to go for the tracheostomy. She is still in the ICU and has had a couple of infections but is stabalizing now. I have my fingers crossed because it has been a roller coaster ride when it comes to her condition - things look good and on the way to recovery and then it completely turns around. She realy wants to go home but whenever things go down she realizes that going home may not be that close.

With regards to going home - we are making arrangements for nursing care at home, equipment, etc. however the doctors are again very resistant to the idea of having a ventilator at home. They feel that it is next to impossible to manage the use of a ventilator at home. I am preplexed by their view because if I look at folks on the forum it looks like there are several people who are managing a ventilator at home. I understand most folks on the forums are from countries with better health care facilities for ALS than India but then how would managing a ventilator by a caregiver at home be that difffernt in India than any other country? The doctors are now suggesting the use of a BiPap, if it works for her, but we are not sure of that as yet.

Since you are managing a ventilator at home in India could share your experience on how easy or tough it is to do so and what issues you face on a day to day? BTW would it be possible to talk to you over the phone in India? I would really appreciate that. My Mom is in Delhi, where are you located? You can email me at rajiv.kapoor@gmail.com if you wish.

thanks very much,
\rajiv
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Old 09-20-2007, 12:43 AM   #14 (permalink)
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Hi Grp,

I have tried to post this reply a couple of times since yesterday but it has not shown up on the forum as yet. Trying once again ...

I can really understand the pain your Dad is going through. Having gone through some very tough last three and a half weeks where our family has had to take some tough decisions I know how you feel too. My Mom was initially very negative when things really got a lot worse three weeks ago suddenly but now I have seen the fighting spirit come back in her. Like your dad she too is a very mentally strong lady (and was physically too) so it is really very painful to imagine how they feel inside when they have to rely on help for the simplest of things.

After a lot of resistance from the doctors in India - we as a family decided to go for the tracheostomy. She is still in the ICU and has had a couple of infections but is stabalizing now. I have my fingers crossed because it has been a roller coaster ride when it comes to her condition - things look good and on the way to recovery and then it completely turns around. She realy wants to go home but whenever things go down she realizes that going home may not be that close.

With regards to going home - we are making arrangements for nursing care at home, equipment, etc. however the doctors are again very resistant to the idea of having a ventilator at home. They feel that it is next to impossible to manage the use of a ventilator at home. I am preplexed by their view because if I look at folks on the forum it looks like there are several people who are managing a ventilator at home. I understand most folks on the forums are from countries with better health care facilities for ALS than India but then how would managing a ventilator by a caregiver at home be that difffernt in India than any other country? The doctors are now suggesting the use of a BiPap, if it works for her, but we are not sure of that as yet.

Since you are managing a ventilator at home in India could share your experience on how easy or tough it is to do so and what issues you face on a day to day? BTW would it be possible to talk to you over the phone in India? I would really appreciate that. My Mom is in Delhi, where are you located? You can email me at rajiv.kapoor@gmail.com if you wish.

thanks very much,
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Old 09-20-2007, 01:20 AM   #15 (permalink)
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Hi Grp,

Maybe posting a third time is a charm ... thus far the post has not shown up.

I can really understand the pain your Dad is going through. Having gone through some very tough last three and a half weeks where our family has had to take some tough decisions I know how you feel too. My Mom was initially very negative when things really got a lot worse three weeks ago suddenly but now I have seen the fighting spirit come back in her. Like your dad she too is a very mentally strong lady (and was physically too) so it is really very painful to imagine how they feel inside when they have to rely on help for the simplest of things.

After a lot of resistance from the doctors in India - we as a family decided to go for the tracheostomy. She is still in the ICU and has had a couple of infections but is stabalizing now. I have my fingers crossed because it has been a roller coaster ride when it comes to her condition - things look good and on the way to recovery and then it completely turns around. She realy wants to go home but whenever things go down she realizes that going home may not be that close.

With regards to going home - we are making arrangements for nursing care at home, equipment, etc. however the doctors are again very resistant to the idea of having a ventilator at home. They feel that it is next to impossible to manage the use of a ventilator at home. I am preplexed by their view because if I look at folks on the forum it looks like there are several people who are managing a ventilator at home. I understand most folks on the forums are from countries with better health care facilities for ALS than India but then how would managing a ventilator by a caregiver at home be that difffernt in India than any other country? The doctors are now suggesting the use of a BiPap, if it works for her, but we are not sure of that as yet.

Since you are managing a ventilator at home in India could share your experience on how easy or tough it is to do so and what issues you face on a day to day? BTW would it be possible to talk to you over the phone in India? I would really appreciate that. My Mom is in Delhi, where are you located? You can email me at rajiv.kapoor@gmail.com if you wish.

thanks very much,
\rajiv

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